Dr. wants a 2-week tune-up

[just1more]

Ok, our son came home last week and had his first clinic visit in Atlanta on Monday.

The Dr was not pleased with the care he has been getting at his old clinic. They had been obsessed with a couple of aspects, primarily his bowel/continence issues, and ignored everything else. Including telling us "he has no lung issues, they are great". Our doctor, a pulmo & the director of the CF clinic, disagrees greatly. He reworked all his pulmo drugs in the first visit and said the GI specialist will look at his others shortly. This lead to this conversation:

Dr: I think we need to do a hosp. stay so we can give him a piccline & IV meds and run some baseline tests (poss bronch, head ct of sinuses, possible endoscope, etc).

Us: ok, about how long

Dr: I think 2 weeks should be good

Us: When should be plan on this

Dr: before the end of the month

Needless to say, we expected this to occur, but he has only been home a week so it is moving quite fast.

So at this point my question for those of you with kids:

How do you manage a 2 week hosp stay with a hyper 6 yr old. We have had kids in the hosptial for 2-3 days but normally sick to the point it was not a big deal. However, there is not much visibly wrong and the thought of our trying to keep him occupied for 2 weeks has me panicing.

Any ideas, suggestions or do I just shave my head so I won't be able to pull my hair out?

 

[just1more]

Ok, our son came home last week and had his first clinic visit in Atlanta on Monday.

The Dr was not pleased with the care he has been getting at his old clinic. They had been obsessed with a couple of aspects, primarily his bowel/continence issues, and ignored everything else. Including telling us "he has no lung issues, they are great". Our doctor, a pulmo & the director of the CF clinic, disagrees greatly. He reworked all his pulmo drugs in the first visit and said the GI specialist will look at his others shortly. This lead to this conversation:

Dr: I think we need to do a hosp. stay so we can give him a piccline & IV meds and run some baseline tests (poss bronch, head ct of sinuses, possible endoscope, etc).

Us: ok, about how long

Dr: I think 2 weeks should be good

Us: When should be plan on this

Dr: before the end of the month

Needless to say, we expected this to occur, but he has only been home a week so it is moving quite fast.

So at this point my question for those of you with kids:

How do you manage a 2 week hosp stay with a hyper 6 yr old. We have had kids in the hosptial for 2-3 days but normally sick to the point it was not a big deal. However, there is not much visibly wrong and the thought of our trying to keep him occupied for 2 weeks has me panicing.

Any ideas, suggestions or do I just shave my head so I won't be able to pull my hair out?

 

[just1more]

Ok, our son came home last week and had his first clinic visit in Atlanta on Monday.

The Dr was not pleased with the care he has been getting at his old clinic. They had been obsessed with a couple of aspects, primarily his bowel/continence issues, and ignored everything else. Including telling us "he has no lung issues, they are great". Our doctor, a pulmo & the director of the CF clinic, disagrees greatly. He reworked all his pulmo drugs in the first visit and said the GI specialist will look at his others shortly. This lead to this conversation:

Dr: I think we need to do a hosp. stay so we can give him a piccline & IV meds and run some baseline tests (poss bronch, head ct of sinuses, possible endoscope, etc).

Us: ok, about how long

Dr: I think 2 weeks should be good

Us: When should be plan on this

Dr: before the end of the month

Needless to say, we expected this to occur, but he has only been home a week so it is moving quite fast.

So at this point my question for those of you with kids:

How do you manage a 2 week hosp stay with a hyper 6 yr old. We have had kids in the hosptial for 2-3 days but normally sick to the point it was not a big deal. However, there is not much visibly wrong and the thought of our trying to keep him occupied for 2 weeks has me panicing.

Any ideas, suggestions or do I just shave my head so I won't be able to pull my hair out?

 

[just1more]

Ok, our son came home last week and had his first clinic visit in Atlanta on Monday.

The Dr was not pleased with the care he has been getting at his old clinic. They had been obsessed with a couple of aspects, primarily his bowel/continence issues, and ignored everything else. Including telling us "he has no lung issues, they are great". Our doctor, a pulmo & the director of the CF clinic, disagrees greatly. He reworked all his pulmo drugs in the first visit and said the GI specialist will look at his others shortly. This lead to this conversation:

Dr: I think we need to do a hosp. stay so we can give him a piccline & IV meds and run some baseline tests (poss bronch, head ct of sinuses, possible endoscope, etc).

Us: ok, about how long

Dr: I think 2 weeks should be good

Us: When should be plan on this

Dr: before the end of the month

Needless to say, we expected this to occur, but he has only been home a week so it is moving quite fast.

So at this point my question for those of you with kids:

How do you manage a 2 week hosp stay with a hyper 6 yr old. We have had kids in the hosptial for 2-3 days but normally sick to the point it was not a big deal. However, there is not much visibly wrong and the thought of our trying to keep him occupied for 2 weeks has me panicing.

Any ideas, suggestions or do I just shave my head so I won't be able to pull my hair out?

 

[just1more]

Ok, our son came home last week and had his first clinic visit in Atlanta on Monday.
<br />
<br />The Dr was not pleased with the care he has been getting at his old clinic. They had been obsessed with a couple of aspects, primarily his bowel/continence issues, and ignored everything else. Including telling us "he has no lung issues, they are great". Our doctor, a pulmo & the director of the CF clinic, disagrees greatly. He reworked all his pulmo drugs in the first visit and said the GI specialist will look at his others shortly. This lead to this conversation:
<br />
<br />Dr: I think we need to do a hosp. stay so we can give him a piccline & IV meds and run some baseline tests (poss bronch, head ct of sinuses, possible endoscope, etc).
<br />
<br />Us: ok, about how long
<br />
<br />Dr: I think 2 weeks should be good
<br />
<br />Us: When should be plan on this
<br />
<br />Dr: before the end of the month
<br />
<br />Needless to say, we expected this to occur, but he has only been home a week so it is moving quite fast.
<br />
<br />So at this point my question for those of you with kids:
<br />
<br />How do you manage a 2 week hosp stay with a hyper 6 yr old. We have had kids in the hosptial for 2-3 days but normally sick to the point it was not a big deal. However, there is not much visibly wrong and the thought of our trying to keep him occupied for 2 weeks has me panicing.
<br />
<br />Any ideas, suggestions or do I just shave my head so I won't be able to pull my hair out?

 

[TonyaH]

Do you have the option of coming home with the picc line after your tests have been completed? We stay in the hospital, 4 days the first time, 6 days the second time, and as soon as his med levels look ok we finish up his ivs at home.

 

[TonyaH]

Do you have the option of coming home with the picc line after your tests have been completed? We stay in the hospital, 4 days the first time, 6 days the second time, and as soon as his med levels look ok we finish up his ivs at home.

 

[TonyaH]

Do you have the option of coming home with the picc line after your tests have been completed? We stay in the hospital, 4 days the first time, 6 days the second time, and as soon as his med levels look ok we finish up his ivs at home.

 

[TonyaH]

Do you have the option of coming home with the picc line after your tests have been completed? We stay in the hospital, 4 days the first time, 6 days the second time, and as soon as his med levels look ok we finish up his ivs at home.

 

[TonyaH]

Do you have the option of coming home with the picc line after your tests have been completed? We stay in the hospital, 4 days the first time, 6 days the second time, and as soon as his med levels look ok we finish up his ivs at home.

 

[pjspiegle]

If you are comfortable with doing the "tune-up" at home, they usually let you do the last 4-7 days at home, unless there is some kind of problem. So you could ask if this would be a possiblity or not.
As far as entertainment, I had a special backpack with stuff in it just for the hospital. This is your opportunity to let him play with stuff that you would never let him play with at home, ie: play dough, silly puddy, slime, paint, and so on. I also got a couple travel games for the back pack and an electronic game or two. At the Denver Children's hospital all the rooms have their own X-Box 360's so we have a game or two that we either rent or take from home with us for that, you can call and ask if they have any games. Also, the kids often would take their own ninetendos and such with them along with some videos to watch.
The time goes fast as you will be doing 4 treatments a day, the iv's, and all the ins and outs of all the diferent docs, especially if its a teaching hospital. Also, if he is not on isolation, he can go to the cafeteria to pick out food, the play room, and just exploring, depending on the hospital.
Another recommendation, go to the Dollar Store and buy a bunch of toys that you can have in a surprise bag for when he is good, cooperates with the nurse, doctor, testing, etc.
We have a special unit where they usualy put the CF kids so there is usually more than one in at a time and the moms get to know one another, support one another, and have fun.
LOL and hope this helps,
Patty

 

[pjspiegle]

If you are comfortable with doing the "tune-up" at home, they usually let you do the last 4-7 days at home, unless there is some kind of problem. So you could ask if this would be a possiblity or not.
As far as entertainment, I had a special backpack with stuff in it just for the hospital. This is your opportunity to let him play with stuff that you would never let him play with at home, ie: play dough, silly puddy, slime, paint, and so on. I also got a couple travel games for the back pack and an electronic game or two. At the Denver Children's hospital all the rooms have their own X-Box 360's so we have a game or two that we either rent or take from home with us for that, you can call and ask if they have any games. Also, the kids often would take their own ninetendos and such with them along with some videos to watch.
The time goes fast as you will be doing 4 treatments a day, the iv's, and all the ins and outs of all the diferent docs, especially if its a teaching hospital. Also, if he is not on isolation, he can go to the cafeteria to pick out food, the play room, and just exploring, depending on the hospital.
Another recommendation, go to the Dollar Store and buy a bunch of toys that you can have in a surprise bag for when he is good, cooperates with the nurse, doctor, testing, etc.
We have a special unit where they usualy put the CF kids so there is usually more than one in at a time and the moms get to know one another, support one another, and have fun.
LOL and hope this helps,
Patty

 

[pjspiegle]

If you are comfortable with doing the "tune-up" at home, they usually let you do the last 4-7 days at home, unless there is some kind of problem. So you could ask if this would be a possiblity or not.
As far as entertainment, I had a special backpack with stuff in it just for the hospital. This is your opportunity to let him play with stuff that you would never let him play with at home, ie: play dough, silly puddy, slime, paint, and so on. I also got a couple travel games for the back pack and an electronic game or two. At the Denver Children's hospital all the rooms have their own X-Box 360's so we have a game or two that we either rent or take from home with us for that, you can call and ask if they have any games. Also, the kids often would take their own ninetendos and such with them along with some videos to watch.
The time goes fast as you will be doing 4 treatments a day, the iv's, and all the ins and outs of all the diferent docs, especially if its a teaching hospital. Also, if he is not on isolation, he can go to the cafeteria to pick out food, the play room, and just exploring, depending on the hospital.
Another recommendation, go to the Dollar Store and buy a bunch of toys that you can have in a surprise bag for when he is good, cooperates with the nurse, doctor, testing, etc.
We have a special unit where they usualy put the CF kids so there is usually more than one in at a time and the moms get to know one another, support one another, and have fun.
LOL and hope this helps,
Patty

 

[pjspiegle]

If you are comfortable with doing the "tune-up" at home, they usually let you do the last 4-7 days at home, unless there is some kind of problem. So you could ask if this would be a possiblity or not.
As far as entertainment, I had a special backpack with stuff in it just for the hospital. This is your opportunity to let him play with stuff that you would never let him play with at home, ie: play dough, silly puddy, slime, paint, and so on. I also got a couple travel games for the back pack and an electronic game or two. At the Denver Children's hospital all the rooms have their own X-Box 360's so we have a game or two that we either rent or take from home with us for that, you can call and ask if they have any games. Also, the kids often would take their own ninetendos and such with them along with some videos to watch.
The time goes fast as you will be doing 4 treatments a day, the iv's, and all the ins and outs of all the diferent docs, especially if its a teaching hospital. Also, if he is not on isolation, he can go to the cafeteria to pick out food, the play room, and just exploring, depending on the hospital.
Another recommendation, go to the Dollar Store and buy a bunch of toys that you can have in a surprise bag for when he is good, cooperates with the nurse, doctor, testing, etc.
We have a special unit where they usualy put the CF kids so there is usually more than one in at a time and the moms get to know one another, support one another, and have fun.
LOL and hope this helps,
Patty

 

[pjspiegle]

If you are comfortable with doing the "tune-up" at home, they usually let you do the last 4-7 days at home, unless there is some kind of problem. So you could ask if this would be a possiblity or not.
<br />As far as entertainment, I had a special backpack with stuff in it just for the hospital. This is your opportunity to let him play with stuff that you would never let him play with at home, ie: play dough, silly puddy, slime, paint, and so on. I also got a couple travel games for the back pack and an electronic game or two. At the Denver Children's hospital all the rooms have their own X-Box 360's so we have a game or two that we either rent or take from home with us for that, you can call and ask if they have any games. Also, the kids often would take their own ninetendos and such with them along with some videos to watch.
<br />The time goes fast as you will be doing 4 treatments a day, the iv's, and all the ins and outs of all the diferent docs, especially if its a teaching hospital. Also, if he is not on isolation, he can go to the cafeteria to pick out food, the play room, and just exploring, depending on the hospital.
<br />Another recommendation, go to the Dollar Store and buy a bunch of toys that you can have in a surprise bag for when he is good, cooperates with the nurse, doctor, testing, etc.
<br />We have a special unit where they usualy put the CF kids so there is usually more than one in at a time and the moms get to know one another, support one another, and have fun.
<br />LOL and hope this helps,
<br />Patty

 

[folione]

I'd say there are 2 general things to address to make it go smoothly:
1. Entertaining the patient
2. Getting control and clarity on the schedule of medical activities.

The first one is basically doing whatever makes the boy happy and relaxing some of the normal rules for awhile: TV and video games, ice cream on demand, new toys/books, etc.

The second one is what I find takes the most work: the idea is to be a total pest with the doctors and nurses so that all the tests and procedures get scheduled in a way that is the least hassle for the patient; if you don't take control, alot of stuff gets done whenever it works best for staff, which is not always best for a cranky kid. For example, if he's getting a PICC line, he'll most likely be sedated which means no food from the night before - so push them to schedule it early so he's not starving all morning. The bronch is the same deal with no food so you won't want to schedule it for the day after the PICC - give the guy a day to eat normally first. Bloodwork is another issue: if they are going to need to draw blood and cannot take it from the PICC line, it might be worth telling them to leave in the IV (which he'll probably get upon admission before the PICC) and use it instead of sticking him repeatedly. Never check in on a Friday.

 

[folione]

I'd say there are 2 general things to address to make it go smoothly:
1. Entertaining the patient
2. Getting control and clarity on the schedule of medical activities.

The first one is basically doing whatever makes the boy happy and relaxing some of the normal rules for awhile: TV and video games, ice cream on demand, new toys/books, etc.

The second one is what I find takes the most work: the idea is to be a total pest with the doctors and nurses so that all the tests and procedures get scheduled in a way that is the least hassle for the patient; if you don't take control, alot of stuff gets done whenever it works best for staff, which is not always best for a cranky kid. For example, if he's getting a PICC line, he'll most likely be sedated which means no food from the night before - so push them to schedule it early so he's not starving all morning. The bronch is the same deal with no food so you won't want to schedule it for the day after the PICC - give the guy a day to eat normally first. Bloodwork is another issue: if they are going to need to draw blood and cannot take it from the PICC line, it might be worth telling them to leave in the IV (which he'll probably get upon admission before the PICC) and use it instead of sticking him repeatedly. Never check in on a Friday.

 

[folione]

I'd say there are 2 general things to address to make it go smoothly:
1. Entertaining the patient
2. Getting control and clarity on the schedule of medical activities.

The first one is basically doing whatever makes the boy happy and relaxing some of the normal rules for awhile: TV and video games, ice cream on demand, new toys/books, etc.

The second one is what I find takes the most work: the idea is to be a total pest with the doctors and nurses so that all the tests and procedures get scheduled in a way that is the least hassle for the patient; if you don't take control, alot of stuff gets done whenever it works best for staff, which is not always best for a cranky kid. For example, if he's getting a PICC line, he'll most likely be sedated which means no food from the night before - so push them to schedule it early so he's not starving all morning. The bronch is the same deal with no food so you won't want to schedule it for the day after the PICC - give the guy a day to eat normally first. Bloodwork is another issue: if they are going to need to draw blood and cannot take it from the PICC line, it might be worth telling them to leave in the IV (which he'll probably get upon admission before the PICC) and use it instead of sticking him repeatedly. Never check in on a Friday.

 

[folione]

I'd say there are 2 general things to address to make it go smoothly:
1. Entertaining the patient
2. Getting control and clarity on the schedule of medical activities.

The first one is basically doing whatever makes the boy happy and relaxing some of the normal rules for awhile: TV and video games, ice cream on demand, new toys/books, etc.

The second one is what I find takes the most work: the idea is to be a total pest with the doctors and nurses so that all the tests and procedures get scheduled in a way that is the least hassle for the patient; if you don't take control, alot of stuff gets done whenever it works best for staff, which is not always best for a cranky kid. For example, if he's getting a PICC line, he'll most likely be sedated which means no food from the night before - so push them to schedule it early so he's not starving all morning. The bronch is the same deal with no food so you won't want to schedule it for the day after the PICC - give the guy a day to eat normally first. Bloodwork is another issue: if they are going to need to draw blood and cannot take it from the PICC line, it might be worth telling them to leave in the IV (which he'll probably get upon admission before the PICC) and use it instead of sticking him repeatedly. Never check in on a Friday.

 

[folione]

I'd say there are 2 general things to address to make it go smoothly:
<br />1. Entertaining the patient
<br />2. Getting control and clarity on the schedule of medical activities.
<br />
<br />The first one is basically doing whatever makes the boy happy and relaxing some of the normal rules for awhile: TV and video games, ice cream on demand, new toys/books, etc.
<br />
<br />The second one is what I find takes the most work: the idea is to be a total pest with the doctors and nurses so that all the tests and procedures get scheduled in a way that is the least hassle for the patient; if you don't take control, alot of stuff gets done whenever it works best for staff, which is not always best for a cranky kid. For example, if he's getting a PICC line, he'll most likely be sedated which means no food from the night before - so push them to schedule it early so he's not starving all morning. The bronch is the same deal with no food so you won't want to schedule it for the day after the PICC - give the guy a day to eat normally first. Bloodwork is another issue: if they are going to need to draw blood and cannot take it from the PICC line, it might be worth telling them to leave in the IV (which he'll probably get upon admission before the PICC) and use it instead of sticking him repeatedly. Never check in on a Friday.